Was I Just Soft? A Reflection on Getting a Diagnosis

Getting diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in my late 20s had an impact on the way I see myself.

hEDS is a genetic disease, and I was born with it. Looking back, there were definitely signs when I was young – like how I never crawled but instead did a front split and used my hands to move forward. But we never connected the dots, and my parents would have said my health issues were just bad luck. In fact, I think they would have said I didn't have any health issues at all.

Mysterious injuries throughout my childhood

All through my childhood, I would get injuries here and there. I regularly wondered why I twisted an ankle every time I ran in the grass while my friends never did. I figured I was unlucky or did something wrong.

Sometimes, I would suddenly get pain in my ankle just walking, and it would feel like something was out of place. I figured I was imagining things. I learned much later that these were partial dislocations.

When I noticed something odd, like being able to turn my feet backward, I would ask my mom, "Is this normal?" and she would show me how it was the same for her.

Pro tip: Don't compare yourself to a family member to see if something is normal. It could be genetic!

My 'flexibility' was outside the norm

Over the years, a few doctors noted that my flexibility was outside the norm. But I was a dancer and proud of my flexibility, so I would explain it: "Oh, it's because I'm a dancer." Maybe, just maybe, they might've caught on otherwise.

For a long time, I mostly thought I was just soft. None of my friends got blisters on their feet if their sock's seam wasn't just right, and none of them sprained a finger playing ball, for example.

Injuries aside, I also had knee pain. Like so many others with hEDS, for years I was told I simply had "growing pains."

Finally, a diagnosis

After my first torn ligament at 15, my knee pain got much worse. Yet the orthopedic surgeon seemed to think I was making it up since I had pain in both my knees, including the uninjured one.

I sprained my ankle for the umpteenth time when I was 19 and went to see a new physiotherapist. When she compared both ankles' range of motion (to evaluate my progress later), she noticed it wasn't normal.

She checked a few other joints and told me I had hypermobility (she called it ligamentous hyperlaxity). She explained that I couldn't do much about it except try to prevent injuries. For example, I should stick to wearing boots and sneakers with good ankle support and avoid impact sports or those where you pivot, like tennis or basketball.

Getting a diagnosis helped me understand my history

She helped me more than she could ever know! Maybe I wasn't just unlucky or soft?

Having a diagnosis didn't make me sicker (nor better), but I wasn't being told it was all in my head anymore. I finally understood so many issues I had over the years and realized I wasn't just too soft. The issue lay in my connective tissues, not with my strength or will.